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Wednesday, January 18, 2012

Today I was cleaning out a file that I had forgotten existed. It was simply marked “Alzheimer’s” which covers a lot of territory. This particular file contained an assortment of national and chapter newsletters, various newspaper clippings, brochures, notes and letters from Mid-Missouri staff, and miscellaneous odds, ends, and memorabilia. The file had been untouched for the past five years.

It was a letter I had written to our family physician that transported me back in time. I had no recollection of writing the letter and read it with fresh eyes.

The letter began with “I have made arrangements with…Guest Home to provide daycare for Jim two days a week beginning in February. For some time I have not wanted to leave Jim by himself during the day while I work. His mother has been keeping an eye on him and preparing his meals for him. Jim no longer has a driver’s license and cannot dial a telephone. It is really hard to know what he will be able to do from day to day as his dementia progresses.”

To this point, I’m wondering why I wrote his doctor this letter.

“If I can get him to cooperate, daycare will be good for him. He doesn’t really do anything during the day besides watch TV. I think the stimulation of being around other people would be good for Jim. I also worry about his mom being so tied down with him and not being able to do a lot of things she likes to do. I also need a backup plan in case his mom would be unable to watch him. I am hoping that daycare will provide us with enough relief that we can keep Jim at home as long as possible.”

As I read on, the purpose of the letter came to light.

“I think if you suggest that he go somewhere during the day to get out of the house and be around other people, he will do it. I don’t know if I will be able to convince him that it would be for his own benefit, but I think he will listen to you.”

With the doctor’s help, we convinced Jim to give eldercare a try. The place I chose was on my way to work and I could just drop him off. After the first day, he didn’t want to go back. I remember pleading with him to go and he balked, but eventually I loaded him into the van. I felt much like a parent dropping off a child at the babysitters. Jim took his guitar with him and spent the day in an out-of-the-way spot playing the same song over and over. He didn’t socialize with anyone or participate in any of the bingo or card games the elderly residents played.

After a few short weeks at daycare, the Guest Home called me and told me they were terminating his care. It seems he picked up his guitar and walked out the door. He had made it to the highway before a staff member missed him and went after him. They just couldn’t be responsible for someone who wandered off.

I had already decided that the daycare arrangement wasn’t working for Jim or me. He was stubbornly insisting he didn’t want to go “today” every time I tried to take him. It just wasn’t working out the way I had envisioned.

The next step was in-home care. That presented a new set of problems due to a high turnover with the service and the last minute calls with excuses why the designated caregiver couldn’t come that particular day. Some days no one showed up and the service didn’t know why. It seemed that they never had a substitute available.

A little over a year after I wrote the letter, I placed Jim in long-term care. We had run out of options, and he needed twenty-four hour supervision.

The letter brought back a rush of emotions. For a few short minutes, I relived the depression, frustration, and responsibility of being a primary caregiver searching for solutions to an ever-shifting kaleidoscope of problems.

I put the letter away with the other memories in the file folder that I couldn’t toss into the trash. As I replaced the letter I noticed the date at the top: January 18, 1999. The letter was written thirteen years ago today. It seems more like another lifetime, another me.

Saturday, January 7, 2012

I started the New Year out right by attending a Jennifer Yazell presentation. Jennifer, CEO of Golden Egg Communication, is a dynamic speaker capable of motivating a die-hard pessimist.

Jennifer teaches that you get more of whatever you focus on. It is logical that if you focus on the positive, you become more motivated.

One of the tools she used to drive home the point was a film clip called “Red Cars.” As the driver of a red Chevy Malibu, I understood this video perfectly. When I bought a red car, I began to notice other red cars. Every time I drove into a Walmart parking lot, it seemed like everyone was driving a red car. Sometimes I had to push my horn-honking button to figure out which red car was mine.

One day I walked out of Walmart carrying a bag of groceries and pushed the unlock button as I approached my red car. I opened the door and started to put my groceries in the back seat, but a vacuum sweeper was in my way. I immediately realized that either the vacuum fairy had visited my vehicle, or I was trying to put my groceries in the wrong red Malibu. Apparently, I was a little too focused on red cars in general and not my car in particular.

Of course, red cars aren’t the most important focus in my life. I firmly believe focusing on the positive gave me inner peace that became my lifeline when Jim developed dementia.

Some chunks of time are so challenging that even Polly Anna would pop anti-depressants. If your loved one has Alzheimer’s, you may wake up each morning with the sense that something is out of balance and dread facing the day. Alzheimer’s is most assuredly a depressing and sad disease over which you have no control. Either your doctor tells you the prognosis or a few Google searches later, you learn the eventual outcome.

Alzheimer’s takes years or even decades to run its course. It’s hard to retain optimism, but if you become overwhelmed by the negative implications of an Alzheimer’s prognosis, the disease has claimed two victims.

When the doctor diagnosed Jim with dementia of the Alzheimer’s type, it was the most crushing moment in our lives. Once we got past the initial shock, we survived on denial for a while. Eventually, we recognized that the disease was progressively taking over our lives.

As we adjusted to our new reality, the darkness lifted. We began to focus on activities we could still enjoy together and not on the disease. Because of that change in focus, we made the most of the reprieve given to us during the early stages.

I won’t try to convince you that suddenly everything was okay. Dementia is a series of losses and the grieving process is ongoing. The key to survival is to focus on the positive, and find ways to take control of your attitude.

The diagnosis was a turning point in our lives, but it wasn’t all negative. Before Jim was diagnosed, my life consisted of getting up in the mornings, going to work, coming home at night preparing dinner, watching TV or reading a book, going to bed and start all over the next day.

After the diagnosis, I contacted the Alzheimer’s Association. Before I knew it, I joined a support group, coordinated the Memory Walk in our town, became a local and national Alzheimer’s advocate, and gave presentations to civic groups.

My circle of friends grew exponentially. Instead of feeling sorry for myself, volunteering became my “red car.” By focusing on others, I received the gifts of friendship and purpose.

I’m not saying I wake up each day and jump out of bed with enthusiasm. Sometimes I can be a grump until I’ve had my morning coffee. I do normally wake up with a mental list of events, activities, or potential accomplishments for the day. In fact, often my To-Do list cannot be completed in one day, one week, or one month. That doesn’t discourage me. After all, it is a New Year and I predict that every item I focus on will be finished before the end of the year.

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Early Onset Alzheimer’s

This award-winning blog is a must-read for individuals experiencing early-onset Alzheimer’s. Less common than standard age-related dementias, early onset Alzheimer’s is virtually always a surprise to diagnosed individuals. Linda Fisher, blogger and author, knows the difficulty of this condition firsthand.

In her Early Onset Alzheimer’s blog, she teaches readers not just how to manage such a frightening condition, but also how to live life to the fullest. Her passion for helping others – showing everyone that life with Alzheimer’s is worth living – is a tremendous gift. Thank you, Linda!

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Early Onset Blog has received several blog awards. Due to new Google regulations, the links had to be removed. Past awards have included the #1 Health Blog , Top 10 blog in 2010, Top 25 Blog award in 2010, and a Top 50 award in 2012. We appreciate the recognition, but also understand the need to remove the links.

I went to sleep around midnight and woke up at 4:00 a.m. I tossed, turned, read, tossed, turned, and read some more. Finally more than t...

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Books are a print version of Linda's award-winning Blog. These books are published for the benefit of those without Internet access or who just prefer to curl up with a book rather than browsing online. If you enjoy Linda's blog posts, you might want to purchase the book for a friend or family member.

Fisher began her online journal to share her experiences with families affected by early onset dementia. Her essays provide insight into family life often from a humorous viewpoint. She writes from her experiences as a longtime Alzheimer's Association volunteer and advocate and ten years as a primary caregiver for her husband, Jim.

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Lindsay Nason wrote about my Early Onset Blog: "I want to thank you for sharing your powerful experience and your creative suggestions with others. . . . Your blog offers a unique and personal insight into this disease, which can be such a comfort to other members of the Alzheimer's community."

Thank you, Lindsay, for your kind words and for including the Early Onset Blog on your website.